Category Archives: Unconditional Love

Caregivers and Carees: Cherish Every Day!


 It is our hope that lets us withstand problems:

It is our beliefs that let us find solutions.

 

TLOCJM

Christmas Eve 2012

Yesterday is gone…

We Celebrate today…

We Hope For Tomorrow! 

No Matter how difficult your Caregiving experience might be…

Cherish every day!

Your love and support inspires us!

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The Perfect Sunset


We Don’t Have Secrets: Secrets Have Us!

‘The Little One’

Many of you who have followed ‘The Purple Jacket’ over the past year or so know that ‘The Purple Jacket’ is a heartfelt account of my Caregiving experience with my partner Richard Schiffer, otherwise known as ‘The Little One’. Diagnosed with esophagus cancer in August of 2011, Richard was given 3 to 4 months to live upon the completion of his chemotherapy and radiation treatments in October of 2011. Now fourteen months past that prediction, ‘TLO’ continues to amaze everyone who has been

The Purple Jackety Highly recommends Caregiving.com

The Purple Jackety Highly recommends Caregiving.com

involved in his care. My readers on both ‘The Purple Jacket’ and my extended Caregiving family at Caregiving.com know that we relish each day, and are thankful for the extended stay that we have been granted. We have truly been blessed!

When I started ‘The Purple Jacket’ on my 54th birthday in February 2011, my goal was to talk about my Caregiving experience with my good friend, Fr. Richard Orlando. I started this blog long before ‘TLO’s’ diagnosis, yet this blog has proved to be cathartic, as I have been able to express my feelings and share my emotions in a much more vibrant way than my previous Caregiving experience with Father Orlando.

My very first post in February 2011 can be read in its entirety by clicking here. Here is a snippet of my first post…

The Purple Jacket” signifies a time in my life that was… And still is…”a life changing event.” We have all had life changing events. Those events often forged from a life crisis are the types of events that fundamentally change our outlook on life and cause us to pause and reflect on our true values. At the time, these life changing events are or can be extremely traumatic. However, these events test our values and often have a cathartic or cleansing effect whereby we emerge from these events stronger and more focused on our values.

Circa 1988

First Picture taken in May 1988

My life changing event occurred when we made the decision to live out the rest of his life in our condo in Fort Lauderdale, Florida. This was by no means an easy decision as his health in his later years was strife with diabetes, congestive heart failure and the final straw, a broken hip in March of 2002 that shattered his self confidence. I remember the call vividly while in my room at the seminary in Milwaukee that year; ‘I fell and broke my hip, I can’t believe it.’ That was the beginning of the spiral that finally led to us picking up stakes and moving full-time to Florida in July of 2004. My life really has not been the same since.

RJO Butterfly World

Last picture taken in October 2005

The 18 months of Caregiving were not without its challenges. The minute we stepped off the plane in Fort Lauderdale we had to head to the hospital as the catheter that was installed upon leaving the nursing home in Rochester was implanted incorrectly. But that experience was a godsend as we ended up connecting with a group of physicians who were excellent and cared for him during our 18 months in Florida. Even in the midst of strife, God was on our side.563334_459536700731852_538508211_n

Father Orlando was a brilliant man, yet often misunderstood. His vocabulary was legendary, just as his sarcasm. As I said in my eulogy at his funeral mass’ ‘He never had an opinion of his own that he dislike, yet he had unassailable logic. He hated fakery and phoniness; one always knew where they stood with him. He did not know how to beat around the bush; being direct was an art.’ He would have never had been mistaken for Father O’Malley in the bells of St. Mary’s, yet over his 59 years of ministry he had more positive effect on people than he ever understood.

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Helen and Sonia at the Day Care Center June 2005

While in Florida, Fr. Orlando was able live a life that was non restrictive. In Rochester, he sat in his room and rarely went out. He coined the facility ‘Prison.’ Like many seniors who are not given a choice on where they want to live as they age, invariably they will learn to resent the environment, no matter how posh the facility might be.

In Florida he was involved in an Adult Day Care Center and was intellectually challenged on a regular basis. He instantly became a leader at the Day Care Center and looked forward to going when he felt up to it. He even celebrated his 58th ordination anniversary while participating at the Adult Day Care Center. But most of all, he was able to live in his own home. One of his life long dreams was to live full-time in Florida. Facilitating his wish was like providing him with extra time for his life.

home

Amazingly we even got him in our pool at our condo with a little help from our friends. “I never thought I ever do this again” he said while he was in the pool’

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Over the 18 years of our friendship he had had two previous near death experiences. We both knew that our trip to Florida would be the last time that he would ever travel. As his primary care physician said to me during our last visit in Rochester, ‘ You know he is never going to get any better, he might as well enjoy himself where he wants to enjoy himself.’

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The 18 months caring for him was difficult, meaningful and certainly, beautiful. As secretive as everything had been for years, knowing that I helped facilitate a beautiful sunset to his life, does allow me some consolation.

With his kidneys failing early afternoon on Wednesday January 25 2006, Father Orlando made his peaceful transition at 1:15am on Friday January 27, 2006. Once his kidneys failed, I never got a chance to talk to him again as the doctors administrated morphine to ease any pain. Yet late that afternoon while holding his hand, he rubbed my hand with his thumb three times and squeezed my hand. That was the last communication I had with him before he made his transition. Holding him while he took his last breath, his transition was peaceful. I knew he was going to a better place.

hands touchgin

I can still feel him touching my hand today.

On Saturday Morning December 22nd, I will talk publicly for the first time about my Caregiving experience with Father Orlando with Denise Brown from Caregiving.com on her Blog Talk Radio Show, ‘Table Talk.’ The show airs at 10:00 am (EST). I look forward to talking with Denise about how this Caregiving experience and his death has affected my life. Why is this a big deal, because there is no time left for secrets, only beautiful sunsets!

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The Perfect Sunset is the start of a long-awaited healing process: thank you for being a part of this journey, we’ve only just touched the surface.

Remember: We Might Have Cancer…But Cancer Does Not Have Us!

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Remember…Blame the Disease, Not The Caree!


When I was a kid, one of my favorite roller coasters was the Zephyr at the old Pontchartrain Beach amusement park in New Orléans.  Those steep curves and big drops were exhilarating, especially when the car made the turn to come back to the station ― when for a moment you thought  that you were going to fly into Lake Pontchartrain only to feel the car make that big pull to the left at the last second and head back to home base.  They do not make Roller Coasters like that anymore! 

Being a caregiver at times is like riding a roller coaster: up the hill, down the hill, swaying through the curves that Caregiving brings to us on a daily basis.  I know I must have ridden the Zephyr over a 100 times in my life, so I knew what to expect and could anticipate the bumps and curves as the car sped down the track.

Caregiving can change at a moment’s notice and… without any warning.  When your anxiety heightens, that is precisely the time when you have to be calm in the presence of your caree.    All of a sudden, those steep curves look ominous; those hills become daunting.

  • When your caree lashes out at you, take a step back and assess the situation; more times than not, it is the disease talking, not the caree.
  • Be attentive, not condescending.
  •  Be proactive, not reactive.
  • As a caregiver, remember you are not the one who is sick.

‘The Little One’ taught me this lesson as he related stories of being a caregiver for his partner Herman who passed away in 1999 from Alzheimer’s.  “As mad as I would get with Herman, I had to remind myself that it was the disease talking and not the man who I had known for 43 years.”   Over the last 48 hours, I have been reminded of this story quite a number of times as we are currently in the mist of change with ‘The Little One’s’ health.  We never know when the tumor is going to act up, but when it does, it takes its toll.   We are hoping that ‘this roller coaster’ gets back on track and pulls into the station .

When riding the Zephyr  I could anticipate the bumps and curves on the track, and I knew that I would always end up back at the station; however our health and well-being is not so predictable.  So when those bad days surface, we both take comfort in knowing that it is the disease, not the person.   Mindful that the person you love and care for, will always be inside your heart no matter what is inside their body.

You see…We Might Have Cancer…

 But Cancer Does Not Have Us! 

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Be A Healthy Caregiver on Blog Talk Radio


 

Join  Chris MacLellan ‘The Bow Tie Guy’ on Tuesday at 1:00pm (est) for ‘Be A Healthy Caregiver’ on Blog Talk Radio  with  special guest Patrick Cavanaugh from Broward County Elderly and Veterans Services in Broward County Florida

 

 

 

 

Substance abuse is an issue that is not often discussed as it relates to our senior community.  Join us for a friendly conversation with Patrick  Cavanaugh with Broward County Elderly and Veterans Services Prevention Program as we discuss substance abuse issues relating to seniors and caregivers.

 

The Prevention Program activities are directed at older adults 55 years and older. Some are provided to at-risk elders, primarily those experiencing mental health and/or emotional problems, caregivers and the general public. Mr. Cavanaugh interacts and/or provides direct services to older adults in an effort to comprehensively address older adult substance abuse in an integrated manner. Over one thousand consumers per year participate in these services.

 

You’ll enjoy Mr. Cavanagh’s upbeat and positive attitude, this is someone who really enjoys his work!

 

Click here to join the show scheduled for Tuesday October 30th at 1:00pm

 

 

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“I’m between 81 and Death!”


If I had no sense of humor, I would long ago have committed suicide.
Mahatma Gandhi

We are three weeks into our FitPass program with Caregiving.com and the group is progressing along just fine. There are so many reasons why we put on weight; stress, poor choices, not seeing food as fuel is just a few of the topics that come up during our FitPass discussions on Monday night. While I have a long way to go in order to sort out why I have put on weight, I am pleased with the loss of 8lbs since we’ve started this program.

It just so happened that the ‘The Little One‘ had his own discussion on health and fitness with a nurse who came to visit him on Monday in our home. This visit was a courtesy of one of the many programs that his insurance plan has for him in Florida. (Hence another reason to be here full-time) While I missed the visit today, I certainly heard about it during our dinner conversation.

“I was given all these instructions on what I should be eating and how I should be eating. While I appreciated the concern and the information I was given, I just looked at her and said...I’m between 81 and death, at this point in my life and what I have been through this past year, what difference does it really make what I eat?” I’m sure he said this in a polite tone.

I mentioned ‘The Little One’s conversation this evening during our FitPass conference call and made the comment, “I’m the one who should have had that conversation today as it is my eating habits and fitness that is out of whack.”

The common denominator here is simple, it is about the perception of one’s quality of life.

‘The Little One’ can never be accused of not having a realistic view of his condition. Yesterday is gone — today is here — not sure about tomorrow. He has admirably lived by this motto for quite some time now. (Remember, he was given 3-4 months to live last October!) Like many people who are diagnosed with a life threatening illness, it’s not uncommon for a conversation to take place about Quality of Life. Quality of Life will have a different meaning for each one each of us. ‘The Little One’ has outlived everyone’s expectations; he is cognizant of what quality of life means to him. Who is it for anyone else to argue with him on this point? At this time in his life, eating one less scoop of ice cream or having one less helping of milk chocolate raisins is not going to do anything for him other than deprive him of a pleasure. I’d say ‘go for it and enjoy!’

Photo Credit: The Purple Jacket

The more I thought about his visit with the nurse, and the more I talked about it with our FitPass group, I realized that I have lost sight of what quality of life means to me. You see, as a Caregiver we get so wrapped up in the needs of our caree, we often forget about our own needs. That extra scoop of ice cream sure feels good when you’ve had a stressful day of Caregiving, work, life etc. However, that does not mean you have to have that extra scoop of ice cream every night!

Photo Credit: Wayne Dyer

In order to make healthy choices, we have to be aware of our options. With that, we have to recognize and own what quality of life means to us as an individual . For ‘The Little One’ that extra scoop of ice cream signifies an accomplishment and truly is a part of his quality of life; he has earned it! For me, my quality of life can not be tied solely to his, for in that, I lose my sense of self. (I.e. Weight Gain) How can I be a good caregiver if I am not taking care of myself?

While the nurse that visited our home on Monday was not there to see me, in reality the message she left…was solely for me!

You see…We might have Cancer…But Cancer does not have us!

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Filed under Advocate, Bow Tie Guy, cancer treatments, caregiver, Caregiving, Esophagus Cancer, Live Love Laugh, Unconditional Love

What A Difference A Year Makes


Life is a succession of lessons which must be lived to be understood. Helen Keller
It was just one year ago that ‘The Little One‘ started his chemo and radiation treatments.  I remember one of my early blog posts during that first week of treatments entitled;  I’m Radioactive!  where ‘The Little One’ said ” I don’t care what you put into my body as long as it is going to help me beat this cancer.”

We learned that the first week of treatments is usually the easiest; we also learned six weeks later just how difficult chemotherapy was for  ’The Little One.’  What they put in his body was dreadful, yet it helped stop the spread of his cancer cells. Now a year removed from the start of his treatments,  ’The Little One’ still has his ups and downs, his good days and his bad days; we are enjoying life in the moment!   According to the American Cancer Society ”Survival rates are often based on previous outcomes of large numbers of people who had the disease, but they cannot predict what will happen to any particular person.”  (“Survival rates for,” 01).

“The Little One” was fortunate that the cancer was local and had not  metastasized. We live life in the moment, enjoying each day as an extended stay, not worried about tomorrow. Given three to four months  to live, ‘The Little One” has far exceeded anyone’s expectations (except ours!).  In 6 weeks, we will be one year past that diagnosis! He has already beaten the first survival rate indicated by the American Cancer Society which is quite an accomplishment for someone of his age.

Through our Caregiving journey we have  learned the meaning of true friends, and what is important in life.  While each one of us deals with the reality of cancer in a different way, each one of us wants to look on the bright side of life. Yesterday is gone, today is here, not sure about tomorrow. It is our hope that lets us withstand problems; it is our beliefs that let us find solutions.

Phase II of our Caregiving journey starts this September as I will be learning  a new chapter in my life;  How to take care of me!   Sounds selfish, but it is the reality that I must face.  Each one of us deals with stress in different ways.  I dealt with the stress of this past year by over eating and over thinking.  I thought I had it under control, but I was in too much control. In many ways, I am better at taking care of others than taking care of myself.  That is a paradox and may be a bit overstated, but that is my reality at the moment. Thankfully I am in a place to deal with it and fix it.

Caregivers are so focused on taking care of their loved one (caree), that we as caregivers often lose sight of self.  To be a healthy caregiver, we do not have to surrender our individuality, we have to  celebrate it!  

What are the (my)  keys to being a Healthy Caregiver?

  • Health < Healthy Caregiving Starts With You!
  • <  Eat Healthy
  • A Achieve Your Personal Goals
  • L Live, Love and Laugh 
  • < Take Time for Yourself
  • H < Heal Your Soul 
  • < Yearn To Care For Yourself As You Care For Others

Checking in at 250 lbs on September 1, 2012 means that I have gained 25 lbs since arriving in Florida in March and have put on almost half the weight I lost 10 years ago.  There is no blame to go around, just a stark reality of a life lesson learned.  The Helen Keller statement is so true! “Life is a succession of lessons which must be lived to be understood.”

A lesson learned is just shelf-life if the lesson is not put into practice! 

In order to be a Healthy Caregiver, I have no choice but to take better care of myself.  There is no better way than to own it, realize it and blog about it.  As The Bow Tie Guy transforms into The Healthy Caregiver;  the lesson that  I have learned is that I have to practice what I preach.   As a proponent of a holistic life of body, mind and spirit, I must apply those principles to myself, too…DUH!

What good am I to myself and the one I care for if I allow my  health  to fail?   

I hope you will continue to join us on our new Caregiving journey!

Remember…

…We might have Cancer; but Cancer does not have US! 

 Survival rates for esophagus cancer. (01, 2012 11). Retrieved from http://www.cancer.org/Cancer/EsophagusCancer/DetailedGuide/esophagus-cancer-survival-rates

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Filed under advocacy, Advocate, Caregiving, Chemotherapy, Esophagus Cancer, Gay Caregiving, LGBT Caregiving, LGBT Seniors, Spirituality, Unconditional Love

A Night with ‘Harriet Craig’


This past weekend, we took the opportunity to motor  to Mount Dora, Florida.  Funny how the last two weekends have developed for us; two weekends ago we were on the verge of heading to the hospital, this past weekend, we are traveling to Mount Dora.  It is difficult to know just what to expect when you are dealing with cancer.

Photo Credit: The Bow-Tie-Guy

Why Mount Dora, Florida you ask?  Going back to their days in Manhattan, ‘The Little One’ has a friend of 60+ years living in Mount Dora.    Mount Dora is a little town just north of Orlando, known for its quaint antique shops.   It is a beautiful town and surprisingly, has plenty of things to do.  But this was not a  weekend for tourism, this was a weekend of storytelling and laughter!

With over 60 years of friendship behind them, the conversation was unrestrained.  Names from the past,  (celebrities to boot!) stories that never ended.  To them, yesterday was today and tomorrow will come: it was a beautiful experience.   Finally the name…’Harriet Craig’ was blurted out and the laughter got more pronounced.   Harriet Craig was a nickname  given to ‘The Little Ones’ friend years ago because of his constant need to clean the apartment he shared in Manhattan with his partner of over 40 years.  Apparently, ‘Harriet’ just could not stand a dirty ashtray, one flick of the ash and up Harriet would go to clean the tray; always in constant motion, always on top of the conversation.  Once I learned why Harriet Craig, I understood the connection to the character in the movie as the villa was in impeccable condition!   As we moved on to dinner, it was easy to see who was in charge…Harriet Craig!     

Photo Credit: Wikipedia

Harriet Craig is a 1950 movie played by the legendary Joan Crawford.  The movie credits go like this… ‘Domineering Harriet Craig holds more regard for her home and its possessions than she does for any person in her life. Neurotic perfectionist Harriet Craig (Crawford) makes life miserable for everyone around her.’  While the description of the character in the movie does not accurately depict ‘The Little Ones’ friend, the metaphor is there in order to create the ‘sting.’

I was told that I was not old enough and privileged enough to call him ‘Harriet Craig!’

Their stories sounded quite familiar to that what you would hear today. If you are a ‘Sister’ you know what I mean. Long standing friends reminiscing about their past, grateful for their partners, their friendship and their freedom to be who they are.  Gay Marriage, Equal Rights and the sorts, all talked about in their day, just not in the volume that we hear today.   

Yet…Who Are They?

They are two close friends, in separate (gay) relationships, lasting over 40 years each, which is quite the accomplishment, no matter what side of the fence you are on!  Yet these accomplishments often go unnoticed in our society as we here more about what’s wrong with gay relationships than what’s right about gay relationships.  They are your uncles, cousins,  they are your friends…

Who Are They? 

Photo Credit: Unknown

They are your neighbor right next door.  We have all heard the phrase…’home is where the heart is.’  That phrase applies to everyone’s home, not just a selected few.

Our friend in Mount Dora is just a few years older than ‘The Little One’, leads an active life, accepted by his cohorts, active in his neighborhood, has dinner with his neighbors and volunteers at hospice.   He is your neighbor. 

Who Are They? 

Stonewall Inn 1969 Photo Credit Diane Davies

They are two men who lived not only during the time of the Stonewall Riots, they lived in the mist of the Stonewall Riots where  friends of them were killed just for being who they are.  The riots inspired LGBT people throughout the country to organize in support of gay rights, and within two years after the riots, gay rights groups had been started in nearly every major city in the United States.   They are your pioneers…

This weekend, when you see all the stores on the news about Gay Pride weekend, remember those Gay Seniors who live alone and cannot get to the parade.  Remember those Gay Seniors who still live in fear; Remember those gay seniors who lived and worked in the trenches in order to bring LGBT equality issues of today to the forefront.

And finally, remember the thousand upon thousand of Gay Seniors who have lived their life in committed and long lasting relationships only to be denied their equal rights.

 Who Are They?   

They are your American Seniors, who just happen to be Gay.

Photo Credit: Webshots

You See…We might have Cancer; but Cancer does not have us!’

Photo Credit: The Bow-Tie-Guy

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The Bow-Tie-Guy Tip of the Day:


The Bow Tie Guy Tip of the Day: Don’t wait around for your life to happen to you. Find something that makes you happy and do it. Everything else is just background noise. — George Mason

Photo Credit: Free Digital Photo’s

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The Bow Tie Guy Tip of the Day:


Nothing breeds success like failure! 

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The Bow-Tie-Guy Tip of the Day


Always be the rose in your Mother’s eye

Photo Credit: ‘The Purple Jacket’

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